From Heartbreaking Miscomprehension Comes New Understanding

Today, it’s hard enough for doctors and patients to communicate effectively, even if they share the same primary language. But layer on not only language differences, but also a yawning cultural chasm, and a visit to western medicine might lead to a child being removed from the care of her parents.

That was the case for Lia Lee, a young Hmong refugee in Merced who suffered from epilepsy. As Anne Fadiman profiled in her riveting book, The Spirit Catches You and You Fall Down, Lia’s doctors grew frustrated by her parents’ unwillingness to follow their prescriptions for treatment, and the doctors ultimately had Lia legally removed from her parents’ care.

As the New York Times reports:

In traditional Hmong belief, qaug dab peg, [Hmong for epilepsy] like many illnesses, is spiritual in origin, caused when the soul becomes separated from the body. A traditional cure might entail visits from a shaman, who would attempt to reunite body and soul.

A work of narrative nonfiction, Ms. Fadiman’s book is a cautionary tale about the cultural chasm between Lia’s family, with its generations-old animist beliefs, and her rationalist American doctors.

“In some sense, I was trying to provide a way of controlling her seizures with Western methods and Western medicines,” said Dr. Neil Ernst, who with his wife, Dr. Peggy Philp, was one of the pediatricians who treated Lia early on. “And in some sense, the Lees were giving up control of their child to a system that they didn’t understand.”

The gulf between the western doctors and Lia’s family may have contributed to a catastrophic seizure that led to severe brain damage. No one thought Lia would survive. She slipped into a persistent vegetative state. Her parents remained utterly devoted to her.

Again, from The Times:

For 26 years, her days varied little: her parents bathed her, fed her, flexed her stiffened limbs, kissed, caressed and tenderly talked to her. There were visits to doctors in Merced and later in Sacramento, where the family moved in 1996. There were periodic visits from a shaman, intended not so much to cure Lia as to ease her suffering.

“Everything that my parents had done for her is all manual labor,” Mai Lee said on Wednesday. “Carrying her from place to place, transporting her to appointments here and there, it was all done manually. They did that for a very long time.”

Lia died on August 31. She was 30 years old. But during those years after she suffered great brain damage, Lia had a tremendous impact on the practice of health and medicine.

Three years after Fadiman’s book was published, Healthy House Merced embarked on an innovative cross-cultural program to teach Hmong shamans and western doctors about each other. As Shuka Kalantari described for State of Health earlier this year:

The shaman training program, Partners in Healing, is now in its twelfth year and has trained over 100 shamans throughout the Central Valley. The program also teaches shamans when to refer their patients to a doctor.

“It’s pretty much the shaman that do the referral,” said (Hmong shaman May) Yang. “Because if patient call me … more of the time I would tell them, ‘You have disease, you have virus, or you have infection. You need to go to the doctor right away.’ And the patient will listen and say, ‘OK, if you say so. I’ll go see my doctor right away.’ If the doctor cannot find anything then they will come to me and I will do the ceremony for them.”

Changvang Her is an interpreter with Healthy House who interprets for shamans and the hospital’s Hmong patients. He also acts as a cultural broker between the shamans and medical staff. Her says the key is to explain things like CAT Scans in a way that’s sensitive to how shamans see the world.

“In order to make the shamans understand about the image here, I explain, ‘The shaman they can see spirits, whereas the doctor use CT, x-ray, and microscope to see disease or illness.’ So we make that comparison so they understand about the equipment.” …

Doctors also attend traditional Hmong ceremonies where they get to spend time with shamans outside of the hospital setting and learn more about their healing traditions. Now physicians in cities with large Hmong populations, like Sacramento and Fresno, are looking to Mery Medical Center as a model. “It’s bridged that gap, from our physicians, our staff, to the Hmong culture.”

About the author

Lisa Aliferis is the founding editor of KQED's State of Health blog. Since 2011, she's been writing stories and editing them for the site. Before taking up blogging, she toiled for many years producing health stories for television, including Dateline NBC and San Francisco's CBS affiliate, KPIX-TV. She also wrote up a handy guide to the Affordable Care Act, especially for Californians. You can follow her on Twitter: @laliferisView all posts by Lisa Aliferis →

MORE POSTS ABOUT

It’s been three years, but the Affordable Care Act is before the Supreme Court again. The constitutionality of the law was settled then. This time, the question is subsidies. Oral arguments happen Wednesday. The case is King v. Burwell, and the … Read More

Editor’s Note: KQED produces ouRXperience, a blog from community correspondents, to enrich coverage of health issues across California. Recently, ouRXperience featured posts from four California communities: ouRXperience welcomes Marley Zalay as our new Greater Oroville community correspondent. For her first blog post, Marley writes … Read More